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Fatigue in Scleroderma

Author: Janey Willis. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer
Video Overview
Sclero Complications and Fatigue
Personal Stories
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Video Overview

Fatigue in Systemic Scleroderma Video
Video: Fatigue in Systemic Scleroderma

Presented by Amanda Thorpe
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Mild to extreme fatigue is a common symptom of scleroderma. It affects your daily activities and overall quality of life. Fatigue is not in your head.

It is caused by physiological problems as well as psychological problems associated with the disease or other symptoms of the disease.

However, it is not part of the diagnostic criteria because it can occur with many other illnesses. (Also see What is Scleroderma? and Symptoms of Scleroderma)

Fatigue can affect your ability to carry out daily activities and overall quality of life. Fatigue is not in your head, it is caused by both physiological and psychological problems of the disease and its symptoms.

There is no cure for fatigue although there are some treatments that may help such as antidepressants and low impact aerobic exercise.

Fatigue is difficult to explain because most people think that rest or sleep relieves it. This lack of understanding can be very frustrating for those of us with scleroderma and our family and friends. We are frustrated by a perceived lack of understanding and sympathy and family and friends are frustrated by our inability to function as we once did because of something that seems so trivial.

It is important to give yourself permission to acknowledge that fatigue is a real problem and you have to accommodate it with lifestyle changes, pacing yourself, resting and/or sleeping when you need for as long as you need and most importantly learning to say NO!

Fatigue: an overlooked determinant of physical function in scleroderma. Our findings indicate that fatigue is common in scleroderma and that pain and fatigue are significant determinants of physical functioning for patients with limited and diffuse disease subtypes. Sandusky SB. (PubMed) Rheumatology (Oxford).

Fatigue. Fatigue can refer to a subjective symptom of malaise and aversion to activity or to objectively impaired performance. British Medical Journal (BMJ).

Fatigue. A condition characterized by a lessened capacity for work and reduced efficiency of accomplishment, usually accompanied by a feeling of weariness and tiredness. Fatigue can be acute and come on suddenly or chronic and persist.


Fatigue Causes. Heart disease, lung disease, connective tissue disease, electrolyte disturbances, GERD and many other disorders. eMedicineHealth.

More than half of Covid-19 patients have lasting fatigue, research suggests. Covid-19 can leave many people with potentially debilitating fatigue months after they've recovered from the illness, research released Thursday found. NBC Health News, 09/17/2020.

Fatigue in primary Sjögren's syndrome (pSS) is associated with lower levels of proinflammatory cytokines: a validation study. Consistent with the original study, pain, depression, and proinflammatory cytokines appear to be the most powerful predictors of fatigue in pSS. PubMed, Rheumatol Int, 2019 Nov;39(11):1867-1873. (Also see Symptoms and Complications of Sjögren's Syndrome)

Fatigue severity in anti-nuclear antibody-positive (ANA+) individuals does not correlate with pro-inflammatory cytokine levels or predict imminent progression to symptomatic disease. Fatigue is common in ANA+ individuals, correlates with fibromyalgia-related symptoms, and is not associated with inflammation or predictive of disease progression. PubMed, Arthritis Res Ther, 2019 Nov 4;21(1):223.

Prevalence of fatigue and its association with clinical features in progressive and non–progressive forms of Multiple Sclerosis. Fatigue was more prevalent amongst participants with progressive MS and higher fatigue severity and impact were associated with greater physical, cognitive, and psychological impairment. PubMed, Mult Scler Relat Disord, 2019 Jan 3;28:276-282. (Also see Multiple Sclerosis)

Prevalence and risk factors for fatigue among breast cancer survivors on aromatase inhibitors. Fatigue is highly related to younger age, higher education level, higher BMI, pain severity and insomnia. PubMed, Eur J Cancer, 2018 Sep;101:47-54. (Also see Breast Cancer)

Depression and fatigue in multiple sclerosis (MS): Relation to exposure to violence and cerebrospinal fluid (CSF) immunomarkers. The aim of this study was to examine the relationships between depression, fatigue, and exposure to violence, with IL-6 and IL-8 levels in the CSF of MS patients. PubMed, Psychoneuroendocrinology, 2018 Jan 4;89:53-58. (Also see Multiple Sclerosis and Depression)

Can the Cancer-related Fatigue Case-definition Criteria Be Applied to Chronic Medical Illness? A Comparison between Breast Cancer and Systemic Sclerosis. Harmonized definitions and measurement of clinically significant fatigue will advance research and clinical management of fatigue in rheumatic diseases and other conditions. PubMed, J Rheumatol. (Also see Breast Cancer)

Cancer-Related Fatigue. Fatigue is a daily lack of energy; an unusual or excessive whole-body tiredness not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from one month to six months or longer). Fatigue can prevent a person from functioning normally and impacts a person's quality of life. Cleveland Clinic.

Coping with Fatigue

Your Guide to Never Feeling Tired Again, Read on for some simple, recharging changes that can help you tackle all of the energy stealers in your life. WebMD.

Scleroderma Complications and Fatigue

Biliary Cirrhosis Symptoms. Symptoms include chronic fatigue, intense and unrelenting skin itching, gradual darkening of the skin, small yellow or white bumps under the skin (usually around the eyes), dry eye syndrome, thyroid problems, and arthritic aches and pains. ISN.

Cardiac Involvement. Diffuse scleroderma can cause arrhythmias, pericardial effusion, and heart failure. Formation of scar tissue in the heart and lungs has recently been recognized as a general pattern probably contributing to overall fatigue. ISN.

Sjogren's Syndrome. Hallmark symptoms of Sjögren's include dry eyes, dry mouth, dry vagina. Sjögren's can also cause fatigue, and it can affect the skin, lungs, heart, kidneys, muscles, and central nervous system. ISN

Fatigue and its relationship with disease-related factors in patients with systemic sclerosis (SSc): a cross-sectional study. We recommend multidisciplinary approaches to evaluate and improve these parameters in the treatment of fatigue from the early period in SSc patients. PubMed, Turk J Med Sci, 09/15/2020.


Fatigue Treatment. Medical treatment of fatigue depends on the treatment of its underlying cause(s). Fortunately, many causes of fatigue may be treated with medications. eMedicineHealth.

The Fatigue Assessment Scale (FAS): quality and availability in sarcoidosis and other diseases. The FAS has good psychometric qualities for the diseases in which it has been examined, including sarcoidosis, and can be used in clinical practice. PubMed, Curr Opin Pulm Med, 06/07/2018. (Also see Sarcoidosis)

Personal Stories

Alexandra: Scleroderma My scleroderma symptoms arrived in great style: reflux, itchy swollen skin, joint and muscle pain and tiredness. Plus hundreds of little red spots (telangiectasia). My mouth was tight and getting smaller too…

Angel G: Systemic Scleroderma with Raynaud's Phenomenon I noticed that the middle finger on my right hand had turned so dark in color that it was practically black and I actually thought there was ink on it and tried to wash it off. Oh, if only the remedy had been so easy…

Carrie Maddoux: Diagnosis, a Work in Progress I was overwhelmed with a general feeling of nausea, sweats, fever and fatigue…

D.M. Hoffe: Progressive Systemic Sclerosis (Scleroderma CREST) After an endoscopy it was discovered I had a Watermelon Stomach…

Dawn M: Linear/Systemic Scleroderma My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form…

Dee B: Limited Scleroderma/CREST Syndrome I also had the problem with people saying I was a hypochondriac, as at that stage all the doctors I saw found nothing wrong with me, but I constantly felt weary and ill…

Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998…

Donna C: Undifferentiated Connective Tissue Disease (UCTD) For the most part I have still been doing very good. Some little setbacks here and there but for the most part much better…

Iko H: Limited Systemic Sclerosis (Belgium) I am fifty-one years old and in May 2011 my diagnosis of scleroderma was confirmed. I am studying for horse veterinarian and am in my last year…

Jaci: MCTD and Autoimmune Hepatitis Out of fear of going back to the doctors, I tried just to live with it, whatever it was. What I found strange was that nobody seemed to noticed how terrible I was feeling, not even the doctors…

Janet Q: UTCD or MCTD I also experienced new symptoms; joint pain, muscle aches, headaches, very painful carpal tunnel syndrome in both hands, back and neck pain, the list grew on and on…

Janice E: CREST/Fibromyalgia At some point I came to the realization that what I was feeling just could not be normal. By this time my hands were swelling…

Julie T: Surviving Daughter of a Diffuse Scleroderma Patient Our family deals with most difficult situations with laughter and humor, even in the most trying times…

Kerrie: CREST Syndrome with Limited Scleroderma If I was not stressed before I went in, I certainly was then. I am going to get referred on to see someone different. Hopefully, I will be luckier second time around…

Krisha S: Multiple Autoimmune Condition I have multiple sclerosis (MS), fibromyalgia, and Stiff Person Syndrome…

Missie R: Mixed Connective Tissue Disease I finally asked for an ANA test to check for lupus. My family doctor hesitated because my symptoms were all over the board…

Rhonda L: Systemic Scleroderma I have recently been diagnosed with sclerodema, and am still trying to wrap my brain around this…

Rosie: Limited Systemic Sclerosis (Australia) Some of my symptoms may not be due to limited scleroderma, however most of these symptoms have appeared since my diagnosis…

Yvette: Undifferentiated Connective Tissue Disease (UCTD) and Thyroid Cancer For now, I have accepted that the diagnosis of my core problem is not important. The way I choose to deal with it is…

Chronic Fatigue Syndrome. Chronic fatigue syndrome, or CFS, is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. ISN.

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